Accepting My Complex Regional Pain Syndrome and Writing a Memoir
As a woman ravaged by intense pain and the loss of virtually all my life’s goals, I have been transformed by struggling and love. And brought to a higher place.
It all began 34 years ago when I was with the man I love, John Garrett, who is still in my life today.
I was a 21-year-old ballerina with a bright future — one where I would dance, act and sing. The core of this was ballet — my greatest love and my identity since I was 7.
Ballet meant more to me than anything else. I didn’t think anything could be more beautiful and there certainly wasn’t anything that made me feel more whole.
Growing up, I was always in leotards with my hair in a bun. In ballet, you’re either right or you’re wrong. I loved that structure and discipline.
Nothing felt so good as the high of it, the sweat, putting that movement to the music. This was my absolute passion. Nothing was going to hold me back. Nothing.
Then it all came to an abrupt end. A minor ballet injury in my right leg triggered a chronic pain disease, complex regional pain syndrome, too often called “the suicide disease.”
For 13 years, the doctors said my problems were all in my head. I was left bedridden for a decade and unable to speak for five years while the CRPS spread throughout my body and attacked my vocal cords.
During that time, most everyone in my life left me.
I was now just a young woman who used to be a ballerina. I had planned my entire life around performance. Then, in a moment, it was gone.
At first I wouldn’t accept that I wasn’t going to dance again. As the months and years ticked by, I watched others go on with their lives.
When I couldn’t live in denial anymore, I became bitter, hateful, even suicidal. Wracked with anxiety, depression and waking with night terrors, I was lost. I was no one.
In those dark years, when anything negative happened, I raged, hurt myself, hurt John. I became a verbally and physically abusive person because I thought I had the right.
After all, I was suffering, a victim who’d been cheated out of her life. I was drowning in self-righteousness.
I never imagined I might someday turn my pain into something of value. Then, almost 20 years ago, in ways I didn’t understand at the time, I began making positive shifts in my life.
I knew I wanted to help others avoid what happened to me. I dropped the Cynthia-as-ballerina identity, a humungous shift, and began to reinvent myself.
Finally, and most importantly, I accepted my pain as an intimate part of me and, indeed, my new normal.
I found a voice as a healthcare reform advocate and launched For Grace to help other women with life-altering pain. But I was still searching for peace. I needed to purge and self-examine.
Writing our memoir, “Battle for Grace,” John and I were given the opportunity to re-visit our traumas and suffering. For the first time, I saw a world that was bigger, by far, than the one I was born into.
As we wrote and read our story aloud, I saw up close the bad energy I’d created. But as the words were carved out, I realized I could stop this chain of pain and violence.
Instead of resentment, I could practice appreciation. Instead of hate, I could enjoy love. Instead of blame, I could forgive.
I forgave the doctors who failed me, who told me I was crazy. I came to recognize that they did the best they could.
I no longer felt resentment for those who left me. They, too, were traumatized by my pain and the absence of any healing.
I befriended my disease, and as I came to appreciate it as a part of who I am, I loved myself more deeply.
I also discovered new ways to enjoy more healing and better tomorrows.
The power of narrative therapy — in this case, writing our book — is a wondrous tool to re-examine our internal demons. That’s why I urge fellow sufferers to use daily journal writing to help them connect the dots and open the doors to positive action.
Being comfortable with “what is” allowed me to let go of my dreams lost and exorbitant expectations. Once I honestly looked at my new normal, it opened the door to fresh possibilities.
What is can be painful, but it’s the birthplace for peace and love.
In the good times, I immersed myself in love. For John and I, for my circumstances, for everyone around me, even for the stuff that still caused me physical and emotional pain.
I know now that real love, with real compassion and forgiveness, is a second-to-none healer.
I now practice self-care. This puts wellness into my own hands. It’s all about diet, exercise, letting go of toxic people and, most importantly, spiritual meditation for myself and John and our planet.
More and more, I’m letting go of the bad energy. Resulting in far fewer burdens and negative thoughts that make me sick. A gift to everyone, especially me.
The greatest transformation for me is that I trust my gut and inner-wisdom to lead the way in my work, life and wellness.
This is still a work in progress, but the impact of trusting myself is so profound it makes each of my days richer.
I am awash, once again, in beauty and appreciation.
This blog was originally published on Maria Shriver.
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